Mar 25, 2013 - 5:53 pm
Here’s a story for those of you on the precipice vis a vis lung nodules identified in a CT scan. It’s a positive story of the kind I was scouring this board for over the weekend. Heaven knows that I’ve read anything touching on this subject over the weekend and collected anecdotes and timelines and found real hope and sage advice—hail to thee O Ratface. Here’s hoping this will help someone in a similar situation and expand the range of possibilities.
I’ve been an occasional poster, but an obsessive reader since about two years ago. Our story was the typical one—neck lump, medical prevarication, the right guy opines, HPV+, 33 IMRT and three Cisplatin concluding June 28. 2011. No PEG. Super nausea. Mucus. Mucus. Mucus. Back to “normal” by Christmas of that year. You have all seen this movie. And probably would like your money back.
So we can see that much-desired two-year mark right up ahead like a Mason-Dixon marker, but still, taking nothing for granted. Nick had a CT –no contrast because of a previous allergic reaction—on the 16th. We knew the report would be available on the 19th and called for a copy to be faxed—this has always been standard when there isn’t a problem. The doctor had only to initial it to make it kosher to share with the patient. The front desk girls sort of gave Nick the run around and said they’d have the doctor, his Radiation Oncologist, give him a call. Nick said that he didn’t need to bother for a normal scan, but nada. Finally on Friday afternoon there was a hurried sign-off and we got the results.
NED for the neck scan, but the lung scan showed 6 scattered nodules ranging from just below 1mm to 2 mm. There was a recommendation for the radiologist for a follow-up in one year and a further comment about the poor quality of the previous scan which was a PET/CT. Throughout the week we’d had no contact from the rad/onc and I was going on the assumption that if things were bad, we’d get a call. (My dad was a doctor and he never put off giving bad news—whether it be medical or that you were not going to get a real live monkey for Christmas.) This seemed to throw that assumption into a cocked hat. Clearly this was devastating news.
So a weekend was spent googling and you know where that leads. Today I found all about Luv4LaCrosse’s study and got contact info for the Jersey version.
This afternoon Nick called his doctor for some answers. The doc was somewhat taken aback. He said he would have called if there were a problem. He would not have okayed it for release to the patient. He said that he sees this presentation all the time. It’s pretty much a given in anyone who lives in New Jersey. He also said that the CT portion of the PET/CT doesn’t resolve as well as the CT alone so more shows up. Geez. Moral: It all depends.